Cirrhosis Stage 4 Grade 3 - Transplant Liver

Hello,
Very happy to find a support group for cirrhosis, was recently diagonised in August - biopsy performed in January and found out that it is cirrhosis either auto immune or crypto genetic they can not give me cause  or the exact type of cirrhosis I have.
Anyway, I am know being evaluted for liver transplant and because of my insurance coverage was told to get approved by medicad for prescriptions otherwise the transplant is worthless without the meds.  The operation is covered but not the meds.  Has anyone else run into this situation

Rejoice
Mare0409

To: Mare0409:
My husband is in Stage 4 Cirrhosis Liver Disease.  He is 62 and has been drinking three 6-packs of Coors Light for the last 15 years.  Before that he was a beer drinking, but I don't think that much.  All this escalated when his 1st wife passed away at the young age of 42 from an anyurism.  We are going for an Ultrasound/Doppler of his Liver tomorrow.   His platelets are 87, bilirubin is at 3.6, from a high of 8 (he was jaundice).  He went to Rehab the whole month of February, 2008,  has been home a week, is very tired all the time.  He sleeps from 9 pm to 9 am, sometimes until 11 am.  If he gets up at 9, then he takes a nap after lunch.   He knows he's all done drinking.  'The question is willl the Drs. recommend a Liver Transplant to an Alcoholic?  He's a good man, spent 32 years, rising through the ranks of Law Enforcement.....he as helped so many citizens over the years...do you think some Doctors would help him with a 2nd chance at life.   The Family Dr. is all for a transplant, provided he is sober for at least 6 mos. to a year....the Liver Dr. is a little more angry that he wasted the liver he was born with with beer.
I am so happy you are being evaluated for a transplant......I hope that you can live as many years as possible.
God bless you.
Louise111

Mare0409
I just noticed, you're from Ft. Lauderdale.  We're in Palm Beach County, in suburban Lake Worth, just 10 miles NW of Delray, Boca.  We have a Golden Retriever, Amber and Pug, Oliver Wendell Holmes.

All the Best.
Louise111

Hi Louise,

So sorry to hear about your husband, we had a friend who recently died of Liver Cancer, he was up for a transplant then they discovered a narcotic in his system and was kicked out of the transplant program in Miami Jackson, after that he was not accepted in any transplant program - we lost him 2007 he was not even 50 - My Liver Dr. when he did upper GI decided to take a little tour around my liver with Doppler and saw dark areas,.  There is always hope that your husband will be able to receive a transplant but only the one above has that answer.  This whole process is surreal - I get tired but being a woman it is hard to just lay down and sleep 12 hours dogs need feed, prepare meals, laundry and so forth and to sleep would be a wonderful thing (is that when you shut your eyes and relax) nope not me I get between 4 & 5 hours during week and usual Saturday's relax and sleep more.  
My puppy Jack's best friend in the whole world is GiGi the Pug and that is sunshine and warmth everytime I see them together.
Hope all turns out in your favor today

Rejoice
Mare

Hi Mare0409:
My husband had an Ultrasound with Doppler of his Abdomen and Liver this morning in Boca.....we see the GI Dr. on Tuesday.

He gets so tired.....got up at 8:15 this morning.....laid down at about 1:00 for a nap....got up at 3:30.   Had a bowl of homemade chicken soup....will go back to bed at 9:00, after a little T.V..

His Encephalopathy is making his a little "punch drunk", i.e......puts the dishes in the wrong cabinets, sees the teakettle boiling, but doesn't turn down the stove......he drinks Lactulose (Enulose) Syrup 3x a day, takes all his meds, vitamins and minerals.

The Hemotologist yesterday said his blood work numbers have improved slightly over the past month, that he has been sober......plateletes are at 77; bilirubin at 3.6......very slight yellow tinge to his skin......real improvement over the past month.

It's not easy...but we gotta be strong.

God bless,
Louise111

Hi Louise111

Your husband is so blessed to have you – and tell him to keep up the good work!
I am on no meds for cirrhosis only meds I take are for stomach ulcer; GERD,
of course, High Blood pressure tablets and a light anxiety med called hydroxyzine ( not narcotic and will not harm liver)  when I get nuts –
symptoms I have are nausea, fatigue and I get upset easier then normal
sometimes it is hard when you feel like poop and every one around you is saying how good you look –
Hard when foods you enjoy do not agree and no occasional cocktail at a friends house; no Frito lays and the list goes on.  
As you say we gotta be strong and that’s why I rejoice –
Yesterday my mom  has been died 36 years she left when I was 19 she was a heavy woman smoked and loved her foods she  in an out of hospitals I was 13 there about when it started and finally the second stroke took her.  Told myself I will not die at 52 and started to take great care of myself -  as I was taking care of my heart - no one told me the after effects of vitamins and minerals  and ibuprofen when taken without foods will be harmful and BOOM -
My engine is working great but my transmission decide to quit


Have a rejoiced day

Mare0409

Mare 0409:
So good to hear from you.........So taking a lot of vitamins and minerals and ibuprofen can cause that much damage to the liver....yikes!
My mom died when I was 9.5 years old  (Breast Cancer). Dad died when I was 21 (massive heart attack).

Jim's tired a lot.....didn't sleep well last night, but slept this morning til noon-ish.   Had a bowl of soup, now it's 3:45 and he's watching College B-Ball on ESPN.   I gave him a hair trim.....still feels tired and weak he says.  A little 'foggy'....wasn't turning the pepper mill upside down, but was turning the grinder part, and no pepper was coming out....then he figured it out!   Stuff like that, which is sad to see....he was so sharp, a crackerjack of a Cop.

But, C'est la Vie.   We have to roll with the punches.  Be well.  Talk to you later.
Louise111

Louise111,

You have had your share of grieving in you life - what strength you have gotten from it - so sorry Jim is slowing down - what an awful thing for you to see everyday and to know how he must be feeling.

I was denied SSD yesterday because I work  - and I am lost right know and don't know what to do - was told by Liver Dr. that I need to have Medicaid for meds and then Medicaid told me I have to apply for SSD - but nothing was told to me what happens if your SSD is denied..

So much paperwork to deal with and the gov, wants me to quit my job and became completely disabled so I can get the benefits - here I am wanting to work until surgery but no I have to stay home and wait  

Not in a good place today you would think the gov. would understand that we still need to make a living before the surgery but I guess that is the way it works.

Hope Jim has a somewhat active weekend, what a joy to have you to chat with

Hi Gang...I have Hep C. I am in stage 3 grade 3.  Been reading your posts and my prayers are for yous. My husband died 2 years ago from Hep C cirrhosis and also had encephalopathy.  People ....take your meds, stay away from salt, red meats, ibprofen, kidney beans, spinach, and iron. Eat more carbs and whole grains. The liver has a hard time processing alot of things. Try to keep your weight down, cause it is better to drink than be over weight...but please don't drink either. Make as many good memories as you can. This is not easy . I tried the Pegitron and Riba which I was non responsive and hoping for a new study to come along. Some days I just want to crawl in that hole ...but then other days, I turn up the music and sing like Dione...but please don't listen to me. Ha ha. I work full time and some days I really gotta push myself. Thank God I have supportive family, friends, and a work enviorment with the greatest business owners. With out them...I would just give up.
HatchieEgg

Hi Everybody - I'm a horrible person!
I just MADE my sweet endearing lovable laughable 77 y.o. mom move in with me, hubby & my youngest son (17) here in Jacksonville, FL. Back on July 3rd, we had driven to Pt. Orange FL, picked her up from her mobile home to celebrate the 4th of July here in town with us and then, the following Tuesday, before we could take her back home (where she had insisted on living by herself for the past 13 years), she took a fall in our bathroom, Thankfully, because our tub is plastic and not ceramic, she only suffered bad bruising.  SO....I put my foot down and told her she couldn't go back home again. Aren't I just awful?  This was after I had tried to coerce her for the past 3 years non-stop...I thought she'd tell me to go to H_LL again - that she was doing JUST FINE.
She has 2 heart stints, Type II Diabetes, her 36 lbs of ascites is again putting a strain on her heart and also has liver cirrhosis (which they attribute to genetics due to other family members dying from the disease). Two years ago they had put her on Hospice. It was simple at the time...; alot of cardiac Dr.'s just wouldn't 'touch' her to do her stint implants to clear up a 75% blockage in one artery & a 99% blockage in another, they said, 'with a 10 foot pole' because she would 'bleed out on the table', they said because of her idiopathic (<-that means they don't know what it comes from) blood disease!  All this stuff to deal with and she's absolutely the MOST positive force and example that I'll ever see in my lifetime. Believes in the Almighty above, still talks about chasing the good-lookin' doctors and loves to get lotto tickets and go to bingo when she's able to.  Says each day is beautiful and loves her pekingese  side-kick, Bunky (her companion-in-crime dog.)  ONLY THING SHE EVER COMPLAINS ABOUT IS THE NASTY, NASTY, GOD-AWFUL DIARRHEA SHE GETS FROM TAKING HER 3 TEASPOONS TWICE DAILY OF ENULOSE!  But she says she's been told over & over that this medicine is the ONLY thing keeping her alive at all.  BUT she REALLY REALLY DETESTS TAKING IT.  Has to wear what she calls 'diapers' (attends/adult pull ups) and I think that this side-effect strips her of her LAST PERSONAL DIGNITY!!!!!!  Is there, has anyone EVER heard of any SUBSTITUTE medicine for the Enulose/Lactose syrup???????  I really wish I could help her to enjoy her final days with SOME happiness and dignity again.    BJD

Hi everyone happy to have found this site...my dad is 78 and was diagnoised last Dec with cirohsis of the liver. No yellowing or anything, we thought he may have been having heart trouble. Fatigue all the time, his legs hurt alot, no energy, and he also had type 11 diabetes. We were shocked with the diagnosis. They really do not tell  you much either about this disease. Long story short, too old for transplant, he has not hep, either fatty liver or some drinking when he was young caused it. He has dehydrated from diuretics, but swells without them, since being diagnoised in Dec..somthing was said about vericies...but, the gastranologist didnt mention banding them at that time...in March of this year he started bleeding profusly from the rectum, rushed to hosp, bp very very low, palse down, we almost lost him...ended up with 8 tranfusions, and emergency vericies surgery! He has had two more since then. Needs one more but, last blood test showed elevated amonia level...drinking lactose 2 x a day was 4, still up ,,,he seems mentally ok but, do you think it will ever go down where he can stop drinking that stuff? He is frustrated like the rest of us but, he needs to listen..and wont some times...did I mention he does not have sugar or hbp anymore? No yellowing, just so tired, he can hardly go to the bathroom. What a screwed up disease! (  BJDTAD sorry about your mom. My mom is 81 and a spri one..thank goodness. ) I am 55 and single so I have been helping with dad alot. Once you take tha lactose can you ever stop I wonder? Any replys would be appreciated...thankx